Senate Ways and Means Subcommittee on SRS

Good morning Madam Chairman and Members of the Committee, my name is Tim Wood. I am the Campaign Manager for the End the Wait Campaign. Thank you for allowing me to appear before you today.

The End the Wait Campaign is a statewide issue campaign working to educate the public and policymakers about why Kansas needs to take bold action in order to end the Developmental Disability (DD) Waiting List. The End the Wait Campaign is a collaborative project of the Disability Rights Center of Kansas (DRC) and numerous stakeholders, funded through a generous grant by the Kansas Council on Developmental Disabilities (KCDD). The ultimate goal of the End the Wait Campaign is to successfully end all Waiting Lists for the Developmental Disability (DD) Waiver.

There are currently 3413 adults and children on the DD Waiting List.

What we define as the DD Waiting List really consists of two separate lists. The first list – called the “Unserved” Waiting List – is where an initial request for services has been made, but the person is not receiving any services. This “Unserved” Waiting List has an average wait time of 31 months for adults and 29 months for children. The second waiting list – called the “Underserved” Waiting List – consists of those who have cleared the first waiting list, start receiving some of their services only to find that they are put on a second waiting list for the rest of the services they need. The services are not “extra” or luxury-type services. These are services that according to their individualized assessment and plans of care are absolutely necessary, however, they are forced to wait on an “Underserved” Wait List anyway. This second “Underserved” Waiting List has an average wait time of 32 months for adults. It is important to note that because children in need of services have largely been limited by the State to receive only Supportive Home Care – the state does not provide an effective or accurate estimate for children with DD on the Underserved Waiting List. The data I have for you today is for all persons who have a service request date of December 1, 2010 or earlier.

Unserved Waiting List Statewide Numbers – The most current numbers show that there are 1440 children and 960 adults on the Unserved Waiting List (total of 2400). These are Kansans who receive no DD Waiver services.

It’s important to note that according to the latest SRS data, the person who is next in line on the “Unserved” list to receive services has been waiting since May 1, 2006 (55 months). Let me let that sink in for a moment. That means that the “lucky” person at the front to the Unserved Waiting List line has been forced to wait without any DD Waiver services for over 4.5 years!

Underserved Waiting List Statewide Numbers – According to SRS, the number on the Underserved Waiting List is 1013 adults. As previously mentioned, because of the way SRS tracks the data we cannot provide an accurate estimate for children with DD on the Underserved Waiting List.

To put into perspective how utterly cruel this second Underserved Waiting List is, let’s take the example above of the person at the front of the Unserved Waiting List who has been waiting without services for over 4.5 years. Let’s say that person clears the waiting list today. They think to themselves “great, now I can get the services I have been waiting nearly 5 years for.” Not so fast. Their individualized plan of care may say that they need both day and residential services. When the magic date happens and they clear the Unserved Waiting List, they may be offered only day services and they are then put on a second Underserved Waiting List for residential services. So, they still have nowhere to live. They will then wait on this Underserved Wait List on average for an additional 32 months! This is on top of the over 55 months they waited on the Unserved Wait List. All total, this “lucky” person with profound Developmental and Intellectual disabilities who is at the front of the line will have been waiting for over 7.5 years just to receive the services they need to accommodate their disabilities.

In the chart below I have provided for each of you the number of individuals on the Waiting List specific to your home counties. If you would like to see statewide data (by county) please refer to the attachment provided in your packet:

Number of Kansans on the DD Waiting Lists In Your Home Counties

Member

Co.

Adult

Unserved

Children

Unserved

Adults

Underserved

Children

Underserved

Total

Sen. McGinn

SG

219

300

153

0

672

Sen. Schodorf

SG

219

300

153

0

672

Sen. Teichman

BA

CM

ED

HP

KM

KW

PR

SF

BT

CA

3

0

3

2

4

5

4

0

10

0

31

2

0

1

6

6

1

3

1

10

1

31

3

0

1

3

1

0

1

0

14

0

23

0

0

0

0

0

0

0

0

0

0

0

8

0

5

11

11

6

8

1

34

1

84

Sen. Umbarger

LB

NO

CK

MG

14

3

7

19

43

11

10

10

20

51

3

4

10

11

28

0

0

0

0

0

28

17

27

50

122

Sen. Huntington

JO

125

248

274

0

647

Sen. Kelly

SN

59

105

64

0

228

Statewide

ALL

960

1440

1013

0

3413

The final chart I want to explain is attached to my testimony – titled “HCBS DD Waiting list (Unserved & Underserved).” This chart tracks the DD Waiting List over the past 16 years. As you can see, the last time the waiting list was virtually eliminated was right after the closure of Winfield State Hospital. That’s because all of the dollars from the savings of the closure of Winfield stayed in the DD system in the form of new dollars to the HCBS DD Waiver. As you can see, the waiting list was 800 in FY 95 and it plummeted to around 50 in both FY 97 and FY 98. The savings stayed in the DD Waiver, and the waiting list was next to nothing. A waiting list of 50 means that you are waiting a few weeks or a couple of months for services, which is reasonable and manageable for Kansas families. The current reality is neither reasonable nor manageable. Today a person can be waiting for 5 years to clear the Unserved list and maybe an additional 3 years to clear the Underserved list. Today the Waiting List has ballooned to 3413. We must work in a concerted effort to reverse this trend and eliminate the DD waiting list.

Naturally, you may be wondering how an individual comes off of the Waiting List. There are two primary ways in which an individual can access services through the HCBS DD Waiver: either through the appropriation of additional funding or due to a crisis situation. Since FY 2006 (which are the only numbers available according to SRS) there have been 1348 people who have moved off the Waiting List because funds became available (either through appropriations or because someone else transitioned off the Waiver) and 1895 who moved off because they were determined to have been in crisis.

Number of Kansans with a DD who have moved off the Waiting List

FY

# of Unserved Accepting Waiting List Funds

# Underserved Accepting Waiting List Funds

Total Persons Accepting Waiting List Funds

# of Unserved Determined in Crisis

# of Underserved Determined in Crisis

Total Persons Determined in Crisis

FY06

*

*

262

**

**

295

FY07

288

107

395

**

**

256

FY08

315

120

435

140

148

288

FY09***

0

0

0**

197

225

422

FY10***

0

0

0**

187

253

440

FY11****

196

60

256

80

114

194

* According to SRS the Unserved and Underserved numbers for the waiting list funds were not tracked

** According to SRS the Unserved and Underserved numbers for crisis were not tracked in FY 06 and FY 07

*** Waiting list funds were not appropriated in FY 09 & FY 10

**** As of December 1, 2010

In his Inaugural Speech, Governor Brownback spoke of the core virtues Kansans hold most dear. The Governor said that Hope, Freedom, and Opportunity are central to the Kansas experience and that as Freedom expands so does Opportunity. Kansans with Intellectual or Developmental Disabilities and their families share those values. Freedom to make important choices about their own lives. Freedom to be included in every segment of society that anyone without a disability would be able to participate in. Opportunity to do things that they or their families may have never thought possible. Hope to live in their own apartment or to hold a job. They want to have friends, socialize freely, and pursue their own dreams. The DD Waiver gives them the Freedom and Opportunity to live their lives with Hope, dignity and respect.

Madam Chairman and Members of the Committee, in the same spirit of Hope, Freedom, and Opportunity Governor Brownback expressed in his Inaugural Speech, I respectfully ask that that you seriously examine ways the Legislature could significantly and aggressively address the needs of this population. Doing this will give some of our most deserving citizens the same Hope, Freedom, and Opportunity we all seek for ourselves, our families, and our friends.

I thank you for this opportunity and I look forward to working with each of you to find real common sense solutions to End the Wait in Kansas.